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IDC - More Results
Hi All,

So I know now I have stage 2 because it's in my lymph gland. The weird thing is the lymph gland has more cancer in it then the actual tumor in my breast. They want to do Chemo first (my biggest fear) then surgery, then radiation. This is all so surreal to me! I'm trying to stay calm but it's so hard :(
11 Replies
Runner Girl
1379 Posts
Hi Emotionalpond‍ ,

It's ok to be scared, it is the unknown and has not been portrayed well on tv and in movies. But chemo is not your grandma's chemo any more. Nonetheless, I took a selfie before going to the cancer clinic for my first chemo - the fear is written all over my face. Then I found out it really wasn't all that bad. They have good drugs to combat most of the side effects and the ones that were hard I reported to my oncologist and they adjusted my chemo accordingly. I lost my hair 2 weeks after the initial chemo, but rocked the head socks in a variety of colors and patterns after I discovered I was allergic to the glue in my wigs. I had 6 treatments between the end of July and the middle of November in 2018 - this time just literally flew by, suddenly I was at 3 and half way finished, then it was my last chemo, 3 days before my 53rd birthday.

Have they given you a date to start your chemo?

Runner Girl

Essjay
1356 Posts
Emotionalpond‍ i too was scared of chemo and how it would impact me. Turned out not to be nearly as bad as I expected. The anti-emetics did a great job of preventing nausea, and while they gave me some crazy sleep and digestive issues, and I lost my hair, and my sense of taste for a bit. Overall, not totally awful.

Having chemo first will give you more options for surgery - if the tumour shrinks then they may be able to do a lumpectomy, which is an easier surgery.

Do you know what regime you will have, and how many doses? Lots of info on side-effects here and lots of experience in these forums...

best wishes, Essjay
Thank you both for responding 😊. I don't actually know the plan until I meet with the mo next Friday... Right now this moment I'm like let's go let's get it done but later it will be fear and so on......
Kims1961
1994 Posts
Emotionalpond‍ I so understand this chemo fear. I had surgery first, in hopes that they wouldn't need to do chemo. As they didn't get clear margins, I had to do chemo - which terrified me - not really sure why? No one in my family or close friends had had chemo, so it seemed to be just a fear of the unknown. What i said to myself was i would take it one treatment at a time. I had the power to stop doing treatment if i wanted. Just being empowered in this way, really helped.

And....chemo was not that bad.I did struggle with side effects, but the medical team had options for me -some really great anti-nausea meds. Losing my hair - eyebrows, eyelashes - sucked - but it also gave me the sense that i was now "treating the cancer". It felt so much better than the waiting, and waiting!!

Please let us know when you start. We are here. Kim
JustJan
324 Posts
Emotionalpond‍ I’m sorry that you have to do chemo. Chemo was also my biggest fear with my diagnosis. I met with the oncologist and because of my stage, it was offered as more of an insurance policy. I ended up declining chemo. When I was diagnosed a couple of months later with ovarian cancer, chemo no longer became a choice. Although not pleasant, it wasn’t nearly as bad as I had expected,

The pre and post medications are very helpful and do take them as prescribed to you. Keep track of all your side effects so you can discuss them with your team. They will make adjustments as you go as they don’t want you to suffer unnecessarily.

If I can give you one tip, drink lots of water day of chemo and for a couple of days afterwards. This will help flush some of the toxins out and can help lessen side effects.

You can do this and know we are here to
support you along the way.
Shora
7 Posts
Hi Emotionalpond‍,

I'm sorry to hear that you'll need chemo but as others have said, it's not as bad as they show in the movies. I'm IDC, ER+ and HER2+ and had the first of my AC chemo treatments 12 days ago. The first couple of days weren't fun but after that I started feeling better with each day. I go for my second session on Thursday so I'm now in the place where I'm bracing myself for losing my hair. I know that's going to be very emotional but I also know it's all part of the journey to fight this so I'll embrace it as best I can.

I found that the stage where you are, the early days after diagnosis and the waiting, were the worst part. That's when I had a hard time stopping my brain from going to dark places, especially at night when I found I couldn't clear my mind enough to sleep. I was so afraid of the unknown, what treatment would be like and terrified that I would feel like crap every day until my treatment is over. But now that I know what I'm dealing with, that it's not as bad as I'd feared, that I have a kind and knowledgeable oncology team and I'm actively doing something to fight this I'm feeling much more positive and in control. Having this forum to hear stories of others in the same boat really helps too.

I know how hard it is to stay calm, I was where you are only a few weeks ago, but you've got this!

Shora
Emotionalpond

I'm so glad you posted and are connecting with people who have been there.

I thought you might find this booklet helpful to prepare for your appointment: Understanding Treatment for Breast Cancer

Keep us posted and feel free to ask any questions you have. Let's get it done is a good attitude to have! You got this!
Lacey
mssf
10 Posts
Hi Emotionalpond,

I am looking at chemo number 15 (paclitaxel) this week and as yet, I have had no side effects, save the hair loss.

I attribute this to the antiemedics: dexamethasone, Benadryl, and famotidine. The dexamethasone is the "worst". It interferes with sleep in a significant way. Last week I slept for only two out of 48 hours. The only upside is that despite the lack of sleep, I don't feel tired. Sleep is like a roller coaster and I've just learned to go with the flow. The Benadryl makes you very sleepy for the first 12 hours. I really try not to nap when I get home in the hope that I will sleep better in the evening. My oncologist started me on ranitidine as the third pre-med to chemo. When I found a recall notice on ranitidine that indicated it contained "allowable limits" of carcinogens according to health Canada, I asked the chemo nurse if there were other options. She suggested famotidine and called my oncologist on the spot who authorized the switch to famotidine.
Ranitidine Recall: September 2019 - July 23, 2020
https://www.healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2020/73607a-eng.php

The other reason I am experiencing no side effects from chemo is due to changes and treatments recommended by my naturopathic oncologist. I changed my diet completely: no carbs, sugar, dairy, soy, grains or flours. Only vegetables, red meat, fish, and fowl. It might sound drastic but it's the best change I ever made and I will never go back. Yes I do cheat a little. I'm allowed to. I have a small container of chocolate Häagen-Dazs in the freezer and have the occasional 2 teaspoons as needed. I drink only water. For a hot drink I toss a small amount of mandarin peel in boiling water.

The other treatments I get include high-dose vitamin C IV twice weekly, mistletoe injections as needed, and a hyperthermia treatment the next day following every chemo session.

My first CT scan on January 13 shows greater than 50% shrinkage across the board. I had also started with a collapsed lung. The radiologist gave me a 50-50 chance of the lung re-expanding. My naturopathic oncologist gave it a 25% chance. However, the CT scan showed there is much more air in my lung than there was initially and since then I've been doing deep breathing exercises and I can feel the increased air capacity in my breathing. With these additional treatments, I fully expect to go into complete remission.

I did request the Foundation One study, against my oncologist's recommendation.
https://www.foundationmedicine.ca/

My oncologist did not recommend the test because in BC, she does not have access to the drugs that may be recommended. But there are other oncologists in BC who can work around the system and access the recommended drug for me. The immunotherapy that was recommended by the study is Pembrolizumab, aka Keytruda. In BC, it is only available to those with lung, Head and neck, and kidney cancer, despite the fact that in the US it was recognized on November 13, 2020 as a treatment for TNBC. As with many drugs and therapies, it is available on a self-pay basis add a rate of $10,500 every three weeks for one year, possibly two. That is definitely outside the scope of my savings.

The Foundation One test it's self, is expensive. $6523.60 to be precise. I got the bill this week. I have submitted an application to the foundation and they may subsidize as much as 50% of the cost. This wasn't the way I planned to spend my retirement savings but it's the best use of my savings I can think of right now.

It's a journey. Don't give up hope and never stop asking questions. Your questions may not be welcome my some, but it's your life not theirs.

mssf
____



TT53
183 Posts
Hi mssf‍ ,
I was looking at your diet, and to me it seems drastic because I love a piece of bread every once in a while. I wish I could do what you did, have to work on my will power. Do you eat any fruits? Thanks.

M..
Marsh
108 Posts
I did 4 rounds of AC chemo. I was tired the next day but then I was back to normal. I never felt sick. I carried on as usual. Gardening, swimming, shopping etc. and I ate whatever I wanted. I was terrified of chemo but soon discovered that things have changed drastically. Everyone reacts differently but if you listen to your body and rest when needed, stay hydrated, I think you will find it's not as bad as you imagine. Take care.
mssf
10 Posts
Hi TT53,

Yes, I agree, the diet does seem to be drastic at first appearance. But after a couple of weeks your body adjusts and the cravings go away. With regard to fruits, my naturopathic oncologist recommends only berries, and only in the morning.

You CAN cheat, but it's best if you keep those naughty foods to 10% of your diet or less. You can go 100% cold turkey for two or three weeks and then gradually introduce a few treats/cheats. My body feels so much more nourished on the diet that I don't even really feel like either of my cheat meals that I used to crave and eat regularly: pizza and A&W teen burgers with onion rings. It would be so easy for me to stop at A&W on the way home from clinic, but I actually now crave the chicken and vegetable soup that I make instead. I dropped 30 unwanted pounds in about a month. For me, it was a matter of life or death. Nobody is supposed to survive stage for triple negative breast cancer, but I will, and when I do I will be going very public. I didn't have this hope it first but my naturopathic oncologist always has believed I can beat it, and now I believe it too.

My naturopathic oncologist also recommended Seasons multivitamins. They smell and taste so bad that I literally threw up first time I took them. Now I just hold my nose and swallow and I take a mouth full of berries right after the vitamins.

You can do it. Your health must come first. I can't tell you how much food I threw out and gave away when I made the switch but it was worth it in every way.

mssf

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